We are about to enter April, Autism Awareness Month. Although significantly overshadowed by the coronavirus crisis, I’m already seeing the standard coverage about “celebrating” autism awareness.
What’s there to celebrate?
Officially one in every 59 children in the U.S. is on the autism spectrum. That statistic has been out for two years and any new numbers will probably be worse as the stories below seem to indicate. Still, as in the past, more kids with autism is never a crisis.
Back in April 2018 the Centers for Disease Control and Prevention released its biennial update of autism’s estimated prevalence among the nation’s children. It was based on an analysis of 2014 medical records and, where available, educational records of 8-year-old children from 11 monitoring sites across the United States.
The new estimate represents a 15 percent increase in prevalence nationally: to 1 in 59 children, from 1 in 68 two years previous.
This also meant that among boys, the new rate was one in 38.
The national advocacy organization Autism Speaks said that the disparity among the 11 states that were averaged “suggests that the new national numbers reflect a persistent undercount of autism’s true prevalence among the nation’s children.”
UNDERCOUNT? So can we expect things to get worse? Will anyone care?
Johns Hopkins University Bloomberg School of Public Health researchers contributed to the one in 59 rate study and in 2018 they were quick to announce that the increase was nothing to lose sleep over.
Rates have been rising since the 1960s, but researchers do not know how much of this rise is due to an increase in actual cases. There are other factors that may be contributing, such as: increased awareness, screening, diagnostic services, treatment and intervention services, better documentation of ASD behaviors and changes in diagnostic criteria.
Regardless of a new increase in autism, it’s never a REAL increase. 2004: one in 166, 2007: one in 150, 2009: one in 110, 2012: one in 88, 2014: one in 68, 2018: one in 59, (also in 2018: one in 40 according to a separate study published in JAMA). Every single time the numbers came out, there was always an official cautioning us against thinking that more kids actually had autism. None of them has ever been sure if THIS INCREASE is a true increase. It seems they’re good at counting but not much else.
Really alarming was the rate from New Jersey in the 2018 CDC announcement: In that state one in every 34 children has autism, one in every 22 boys. New Jersey is credited with having a statewide registry of children with autism so their identification of the disorder is considered very accurate. STILL no one speculated that New Jersey’s numbers might be the real deal for the entire country.
Currently officials have neatly left us to expect even higher autism numbers, and news reports have set the stage.
The percentage of American schoolchildren receiving special education services as a result of an autism diagnosis doubled over 10 years.
New data from the U.S. Department of Education shows that 10.51 percent of all students with disabilities ages 6 to 21 in 2018 were identified as having autism. Just a decade earlier, that figure was at 4.97 percent….
Across the nation, the percentage of students with disabilities who had autism varied by state, with a high of 15 percent in Minnesota during the 2018-2019 school year. By comparison, only 5 percent of students with disabilities in Montana were on the spectrum at that time….
So why is the percentage of students with autism in American schools continuing to increase? We weren’t told. Curiously the Department of Education announcement didn’t get mainstream news coverage at all.
Other findings by top experts showed even more reasons to worry that we’ll never see the end of autism increases. It seems that doctors still are not finding all the kids with autism.
Back in Jan 2020 we learned this from MedicalExpress: One-fourth of children with autism are undiagnosed.
One-fourth of children under age 8 with autism spectrum disorder—most of them black or Hispanic—are not being diagnosed, which is critical for improving quality of life.
The fidings, published in the journal Autism Research, show that despite growing awareness about autism, it is still under-diagnosed, particularly in black and Hispanic people, said study co-author Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study, which contributed to the research.
Researchers analyzed the education and medical records of 266,000 children who were 8 years old in 2014, seeking to determine how many of those who showed symptoms of the disorder were not clinically diagnosed or receiving services.
Of the nearly 4,500 children identified, 25 percent were not diagnosed. Most were black or Hispanic males with deficits in mental abilities, social skills and activities of daily living who were not considered disabled.
Are we to understand that better diagnosing/greater awareness, long credited as the reason more and more kids have an autism label, hasn’t extended to black and Hispanic children? Are we to expect a greater effort to find the minority kids with ASD and to hear about even worse numbers in total?
While studies and findings are concerning, individual news reports should really have us worried. Disability Scoop:
New research suggests that the prevalence of autism is on the rise and it’s growing at a significantly faster clip among certain groups of kids. Between 2007 and 2013, autism rates increased 73 percent among Hispanics and 44 percent among black children ages 3 to 5. At the same time, prevalence rose 25 percent for whites in that age bracket.
… Traditionally, autism rates among minority groups have lagged, a factor often attributed to a lack of awareness and resources in such communities. However, the new study found that prevalence among black children surpassed whites in 30 states by 2012.
“These results suggest that additional factors beyond just catch-up may be involved,” Nevison said. The most recent figures from the CDC, which were released last year, indicate that 1 in 59 children have autism.
… Since the start of the century, the government’s official estimate of autism prevalence has increased 150 percent.
“There is no doubt that autism prevalence has increased significantly over the past 10 to 20 years, and based on what we have seen from this larger, more recent dataset it will continue to increase among all race and ethnicity groups in the coming years,” said Walter Zahorodny, an autism researcher at Rutgers New Jersey Medical School who worked on the study.
Facing a staggering 47% increase in the number of Autism Spectrum Disorder (ASD) students enrolled in its district since 2010, Plymouth-Canton Community Schools — like most school districts in the country — is entrenched in a daily race to keep up with the complexities that accompany its rising special-needs population.
For all of the questions and dilemmas that accompany these complexities, there are few clear-cut answers, a decent share of resistance from families searching for the ideal programs for their children and a paperwork-coated strain on special-education teachers that administrators fear could lead to early burnout and system-crippling teacher shortages….
Difficult questions Among the most challenging dilemmas school districts confront throughout each ASD student's educational career are: Where to place each student in the multi-tiered special education flow chart?...
On Feb 3, 2020 a California education publication called Ed100 reported that special education costs were “overwhelming” school budgets.
Nearly 800,000 students in California receive special education services — about one in every eight students.
According to 2019 estimates by the California Legislative Analyst Office (LAO), the average annual cost of educating a student with disabilities — $27,000 — is almost triple the cost to educate a student without disabilities — about $10,000.
Ed100 reported that special ed costs have “grown significantly” over the past decade resulting in a 28 percent increase.
About two-thirds of the cost increases reflect the growing number of students with severe disabilities, especially autism.
Why there is this growing number of students with severe disabilities/autism is anyone’s guess. Most of the article was devoted to discussing how the cost of special ed is handled and what the federal government requires.
A story out on Mar 23 from Naperville, Illinois painted a really dismal picture of autism in America with no possible solution.
Readers were told that autism diagnoses among children have “climbed steadily over the past few decades,” and the current rate “is estimated at 1 in 40 children.”
One in 40?
(There are several autism rates that are routinely cited, but there’s the same reaction to one in 40 as we see when it’s given as one in 59: No alarm.)
In actual numbers, the article explained that the total of kids on the spectrum went from 93,000 in 2000 to over 617,000 by 2016.
As schools deal with an increasing number of children with disabilities like autism, demand for disabilities awareness and sensitivity programs has increased, meaning Portland-based organization The Cromwell Center currently has a waiting list of 25 schools….
She estimates that between 10 and 12 percent of the school’s students have some type of disability….
Last year, there were almost 64,000 students with a diagnosed disability in Arkansas public schools. That is 13.4% of the state's total student enrollment.
Arkansas school districts spent $458 million on special education services, or about $7,382 per pupil with a disability. In the 2012-2013 school year, Arkansas schools spent $412 million on special education for 54,000 students.
Except for the category of children with multiple disabilities, all other categories have shown increases, with autism growing the most over the past few years. The number of students diagnosed with autism has gone up 55% since 2013. The increase is attributable to an increased awareness among educators and others of the characteristics of autism.
The growth in children diagnosed with dyslexia has followed a similar trend. In 2014, for example, 957 students received therapy for dyslexia. In 2014, only 89 school districts and one charter school reported results from screening for dyslexia.
School Superintendent Timothy F. Connellan's proposed budget for the next school year represents a 3.11% increase over current spending levels. The $101.6 million budget request would add new special education positions as school officials seek to expand the district's autism program. It also calls for a new language arts teacher, math specialist and registered nurse position. Connellan presented the budget to the school board Thursday night.
The overall request would increase spending by more than $3 million over the district's current $98.8 million spending plan. More than than $381,000 would fund the additional special education positions.... Connellan said special education is “really driving” the budget increases. …
The new special education positions include a full-time teacher, seven full-time behavioral therapists and a half-time speech language pathologist in a proposed expansion of the school district's program for students on the autism spectrum. Connellan said there has been a significant increase in the number of students on the autism spectrum. School department figures show that number has steadily increased in recent years. During the 2013-2014 school year, there were 90 students diagnosed with autism in Southington schools. By the 2018-2019 school year, the figure had risen to 123.
Discussions on the budget request will continue next week, with public workshops scheduled for Tuesday and Thursday. Board of Education member Robert S. Brown said he wants to be sure the public and other elected officials are aware of the increased population of autistic students. “I think we need to clearly explain the numbers have increased so dramatically,” he said.
BBC News: Northern Ireland, Education review 2019: A year of stretched school budgets
Throughout 2019 there were several high-profile warnings about stretched budgets in schools.
In July, the Northern Ireland Affairs Committee at Westminster said a lack of money was having a devastating impact on schools….
It said Northern Ireland had faced the highest school spending cuts per pupil in the UK over the past decade….
A number of parents also spoke out about the problems they had getting appropriate help for their children with autism and other special needs.
The proportion of children with autism in Northern Irish schools has almost trebled in a decade, according to the Department of Health.
…As the number of cases suffering from autism spectrum disorder (ASD) is increasing, a recent study says how insufficient the supply of certified applied behaviour analysis (ABA) providers is to meet the needs of children with autism.
The study has found that there is substantial variation across states and regions. For instance, the per capita supply of certified ABA providers is substantially higher in the Northeast than in any other region in the USA. The study was published in the journal Psychiatric Services.
The rising prevalence of ASD underscores the importance of access to evidence-based interventions such as ABA. An estimated one in 59 children had ASD in 2014, up from one in 125 a decade earlier, according to the Centres for Disease Control and Prevention….
It’s the type of decision parents across the Central Valley are facing with increasing regularity, as autism diagnoses soar and parents seek classrooms with better options for their children. Special education enrollment has surged in the last decade, with more than 96,000 students pouring into school districts across the state, according to data from the California Department of Education.
One of the drivers has been a marked increase in students with autism and other behavioral delays, a Bee analysis shows. At the same time, the number of students with other disabilities grew modestly or decreased between the 2009 and 2018 school years.
Although the trend is undeniable, no one can say exactly why it’s happening….
…“It’s the concentration of students within that number and that’s where it’s affected a lot of schools because services for students with autism can be very expensive.” The increased prevalence of autism has been a medical mystery for years.
Awareness has grown, experts say. Teachers are trained to recognize the disorder. And in 2013, the medical definition of autism was changed, grouping a number of conditions like Asperger’s syndrome and pervasive development disorder under the umbrella of autism.
“The increase isn’t just in California but it is nationwide, probably worldwide,” said Aubyn Stahmer, who oversees community treatment research at the MIND Institute. “The diagnostic definitions have broadened a little bit and that explains some of it and awareness has really increased quite a bit.”…
In the Fresno Unified School District, special education accounts for about 14 percent of its budget. In the last decade, state education data shows enrollment jumped by 6 percent but the share of students with autism climbed nearly three-fold.
As the prevalence of autism spectrum disorder continues to rise in the United States, the supply of certified applied behavior analysis providers to match the demand for treatment has fallen significantly short, according to study findings published in Psychiatric Services.
“There is an insufficient supply of applied behavior analysis providers in nearly all states in the U.S.,” Yidan Xue Zhang, MC, of the Rollins School of Public Health at Emory University in Atlanta, told Healio Psychiatry. “We need to increase the supply of autism service providers to improve treatment access for children with autism.”…
Enrollment at the Learning Center in Manchester soon will grow to 36 students, the maximum number that can be served in the current space, Danielczuk said. She and Goduti said there is a waiting list to get into the school….
Nationwide, 1 in 59 children is diagnosed with autism and the rate has grown steadily for the past 20 years, according to the National Autism Association. Although no two children on the spectrum are alike, boys are four times more likely to have autism than girls and about 40 percent of all diagnosed children do not speak.
That’s the story everywhere as there are lots more articles like these out there. We have no national strategy to deal with this disaster. We’re just going to let it overwhelm us. We have other priorities.
Anne Dachel is Media Editor for Age of Autism. Visit her site Loss of Brain Trust where she catalogs THOUSANDS of stories from around the world.